Tobi in the inhaler form

[JennifersHope]

Today I had a CF clinic check up.. , I had no complaints, I feel good. everyone was helpful. I got loads of "gadgets to take home" New scripts...etc...

I got a new... Acapella.. I love my RT and my acapella..

I got the scoop on the E-flow, which I have decided I am not going to get,

but my clinic is doing a study with people who actually get to do the inhaler version of the TOBI.. I am happy to report that I am to healthy to do the study, my lungs are disqualified because my PFTS are to high.

I am wondering if anyone is involved in this study??? I would give anything to be able to just inhale TOBI instead of doing the 20 + minutes it takes to do it.

I would love to know who is doing it and what you thought of it.

 

[JennifersHope]

Today I had a CF clinic check up.. , I had no complaints, I feel good. everyone was helpful. I got loads of "gadgets to take home" New scripts...etc...

I got a new... Acapella.. I love my RT and my acapella..

I got the scoop on the E-flow, which I have decided I am not going to get,

but my clinic is doing a study with people who actually get to do the inhaler version of the TOBI.. I am happy to report that I am to healthy to do the study, my lungs are disqualified because my PFTS are to high.

I am wondering if anyone is involved in this study??? I would give anything to be able to just inhale TOBI instead of doing the 20 + minutes it takes to do it.

I would love to know who is doing it and what you thought of it.

 

[JennifersHope]

Today I had a CF clinic check up.. , I had no complaints, I feel good. everyone was helpful. I got loads of "gadgets to take home" New scripts...etc...

I got a new... Acapella.. I love my RT and my acapella..

I got the scoop on the E-flow, which I have decided I am not going to get,

but my clinic is doing a study with people who actually get to do the inhaler version of the TOBI.. I am happy to report that I am to healthy to do the study, my lungs are disqualified because my PFTS are to high.

I am wondering if anyone is involved in this study??? I would give anything to be able to just inhale TOBI instead of doing the 20 + minutes it takes to do it.

I would love to know who is doing it and what you thought of it.

 

[sue35]

I wish I was in it, I was offered but had too much on my plate at the time. Wonder if I could get back in, I should ask.

May I ask why you aren't using the eflow? I was going to ask my doctor about it and wonder what you thought

 

[sue35]

I wish I was in it, I was offered but had too much on my plate at the time. Wonder if I could get back in, I should ask.

May I ask why you aren't using the eflow? I was going to ask my doctor about it and wonder what you thought

 

[sue35]

I wish I was in it, I was offered but had too much on my plate at the time. Wonder if I could get back in, I should ask.

May I ask why you aren't using the eflow? I was going to ask my doctor about it and wonder what you thought

 

[sue35]

I wish I was in it, I was offered but had too much on my plate at the time. Wonder if I could get back in, I should ask.

May I ask why you aren't using the eflow? I was going to ask my doctor about it and wonder what you thought

 

[sue35]

I wish I was in it, I was offered but had too much on my plate at the time. Wonder if I could get back in, I should ask.

May I ask why you aren't using the eflow? I was going to ask my doctor about it and wonder what you thought

 

[sue35]

I wish I was in it, I was offered but had too much on my plate at the time. Wonder if I could get back in, I should ask.

May I ask why you aren't using the eflow? I was going to ask my doctor about it and wonder what you thought

 

[JennifersHope]

I know at my clinic it is not to late to join the study.. I just couldn't do it because your PFTS have to be in a range that was lower then mine.

The E-flow I decided against for a few reasons..

One is you have to order drugs from the ONE pharmacy.. My insurance does not allow me to order from anyone but MedCo.. or my co pay would be over a few hundred dollars a month for the one drug.

My CF nurse, who is one of the most amazing nurses I know..told me she has a few people on a study that are using the e flow, one has broken and not held up. The other ppl using it don't like the amount of time you have to put into it cleaning it.

The team is not impressed with what they have seen with it.

Mainly at this point, I can't afford to pay the co pay I would have to pay for the medicine and the amount of money they would rent it to me would rob my insurance money that I have left before my max payout is done.

I hope you can get in the Tobi study.

Jennifer

 

[JennifersHope]

I know at my clinic it is not to late to join the study.. I just couldn't do it because your PFTS have to be in a range that was lower then mine.

The E-flow I decided against for a few reasons..

One is you have to order drugs from the ONE pharmacy.. My insurance does not allow me to order from anyone but MedCo.. or my co pay would be over a few hundred dollars a month for the one drug.

My CF nurse, who is one of the most amazing nurses I know..told me she has a few people on a study that are using the e flow, one has broken and not held up. The other ppl using it don't like the amount of time you have to put into it cleaning it.

The team is not impressed with what they have seen with it.

Mainly at this point, I can't afford to pay the co pay I would have to pay for the medicine and the amount of money they would rent it to me would rob my insurance money that I have left before my max payout is done.

I hope you can get in the Tobi study.

Jennifer

 

[JennifersHope]

I know at my clinic it is not to late to join the study.. I just couldn't do it because your PFTS have to be in a range that was lower then mine.

The E-flow I decided against for a few reasons..

One is you have to order drugs from the ONE pharmacy.. My insurance does not allow me to order from anyone but MedCo.. or my co pay would be over a few hundred dollars a month for the one drug.

My CF nurse, who is one of the most amazing nurses I know..told me she has a few people on a study that are using the e flow, one has broken and not held up. The other ppl using it don't like the amount of time you have to put into it cleaning it.

The team is not impressed with what they have seen with it.

Mainly at this point, I can't afford to pay the co pay I would have to pay for the medicine and the amount of money they would rent it to me would rob my insurance money that I have left before my max payout is done.

I hope you can get in the Tobi study.

Jennifer

 

[Chaggie]

I don't think that's necessaarily true Jenn, when I get approved for my e-flow I will still be going through my pharmacy to get the meds. You just need work out what the adjustments would be with the e-flow pharmacy.

 

[Chaggie]

I don't think that's necessaarily true Jenn, when I get approved for my e-flow I will still be going through my pharmacy to get the meds. You just need work out what the adjustments would be with the e-flow pharmacy.

 

[Chaggie]

I don't think that's necessaarily true Jenn, when I get approved for my e-flow I will still be going through my pharmacy to get the meds. You just need work out what the adjustments would be with the e-flow pharmacy.

 

[NoExcuses]

I was telling Jen on chat last night to figure out the lower dose of any anti-biotic and just squeeze that fraction out of the vile.

Otherwise, for pulmozyme or HTS, she doesn't have to adjust the dose.

So she can continue to order from her MedCo mail order and get the discount. No need to order meds through their pharmacy.

 

[NoExcuses]

I was telling Jen on chat last night to figure out the lower dose of any anti-biotic and just squeeze that fraction out of the vile.

Otherwise, for pulmozyme or HTS, she doesn't have to adjust the dose.

So she can continue to order from her MedCo mail order and get the discount. No need to order meds through their pharmacy.

 

[NoExcuses]

I was telling Jen on chat last night to figure out the lower dose of any anti-biotic and just squeeze that fraction out of the vile.

Otherwise, for pulmozyme or HTS, she doesn't have to adjust the dose.

So she can continue to order from her MedCo mail order and get the discount. No need to order meds through their pharmacy.